Thank you for sending me a copy of the revised draft guidelines for the treatment of CFS. Firstly, can I say that your timing for responses and the limit of one month to respond is appalling. These guidelines have been sitting around for years awaiting a revision because they were considered biased and incomplete. A revised version is then suddenly thrust upon us in July when many of us with children are on holidays (as I was) and then we are given a short time-frame to respond. What is the hurry? Is this how the RACP (of which I am a fellow) undertakes rigorous peer review of guidelines? To say that I am disappointed with this process would be an understatement.

For the record I wish to make the following comments regarding the contents:

The content has hardly advanced from the biases and incompleteness of the initial draft guidelines. There are also no set of references for cross checking your interpretations.

I also note on page 64 that the submissions invited to the previous guidelines from practitioners as well as consumers, were compiled and summarised by the consumer representative on the Working group. With all due respect to the consumer representative, this should have been done by a senior medical research person, especially given the technical responses from the medical practitioners and researchers, and almost certainly from other groups. This only confirms the perceived lack of professionalism and integrity in creating a balanced and unbiased set of guidelines for CFS.

Too much emphasis is placed on the fatigue and sleep disturbances at the expense of the other key symptoms of CFS, viz neurocognitive dysfunction and orthostatic intolerance. In fact, there is no mention of the latter, despite the extensive literature on the matter which surely you must be fully aware of.

CFS (as per our current CDC criteria) is a heterogeneous, complex (multi-system and multi-factorial) illness. In view of this, the recent State of the Science Conference on CFS (Oct 2000, Arlington Virginia) which was organised by the US Department of Health and Human Services acknowledges the need for CFS patient populations to be sub-grouped/stratified when it comes to research. If this is the case, then this should equally apply to the management of CFS. See also a recent article that exposes the problems with the current CDC criteria – vague, over-inclusive and hence poor diagnostic reliability (J of CFS 2000 Vol7(3) p17-22).

All of the CBT studies to date ignore the above fact, and some even modify the CDC criteria used (Judith Prins, Lancet 2001: 357 : p841-47). Clearly, all of the studies are methodologically flawed and their conclusions biased. Some of the studies even admit this fact. However, CBT is a very useful tool to help some patients to better understand and cope with their debilitating illness. It does not treat the underlying (as yet unidentified) disease processes in CFS. Furthermore, I have found that supportive therapy and education alone can achieve as much as CBT.

There is clearly a core group of "classic" CFS patients who have: Chronic fatigue easily exacerbated with minimal physical or mental effort, neuro-cognitive dysfunction (also easily exacerbated with minimal mental effort), sleep dysfunction, plus or minus significant myalgia (especially in the initial stages), plus or minus orthostatic intolerance symptoms. In those who develop depressive symptoms, they invariably have reactive depression.

You also completely ignore the growing evidence from neuro-imaging (both SPECT and PET) of significant, localised, reductions in blood flow to areas of the limbic system and brain stem regions. The areas affected are different from those seen in patients with depression. These areas correlate well with many of the CFS symptoms. Preliminary data from a recent Italian PET study (see http://www.salutemed.it/cfs/bp.htm) confirms the above, as do recent SPECT studies conducted at the The Queen Elizabeth Hospital (Adelaide) – soon to be published. Therefore, even though the disease process cannot be defined, there is objective evidence of disturbed brain funct– this is a fact.

Although you source some Level IV evidence for phenomena associated with CFS (Page 25) you appear to completely ignore abundant level IV evidence (and for that matter opportunities to gather such information from Australian GPs and Physicians through focus groups) on consensus opinions of respected authorities (in Australia and overseas) based on clinical experience and/or descriptive reports. The latter should form the backbone of management strategies and your guidelines, which then evolve as further good evidence comes to light. In your introduction you emphasize clinical judgement, yet this is down played considerably in your guidelines. Medicine is both an art and science, with most advances based on innovative empirical approaches to treatment that can then be tested by RCT's and the like.

I would add Iron Studies to your list of recommended investigations. I have found a high proportion of women with fatigue to have low iron stores and normal CBP/FBE. Their fatigue disappears with Fe supplements and hence CFS excluded.

The aim of current CFS management is not cure, but improvements in symptoms and functional capacity. My experience is that the David Bell disability scale is a simple but useful additional tool to assess improvements with functionality and symptomatology.

There is no mention of dietary aspects to management. The simplest advice I give to my CFS patients is to stick to low glycaemic index foods and increase protein intake. I do this mainly to avoid the hypoglycaemic symptoms that many of my CFS patients experience, including the afternoon tiredness. The latter resolves in all cases treated and contributes to their overall well being and improved sleep patterns.

The other aspect about diet is avoiding alcohol. Alcohol intolerance (causing exacerbation of CFS symptoms) is common amongst classic CFS patients. Quiet the opposite is seen in patients with depression only.

You mention loss of aerobic fitness on page 8. My experience is that this is rarely the case and there is research backing this up. Most of these people can undertake a rigorous exercise test in a lab like normal controls – they do not fall off the perch. But the next day (usually 24 hours later) many are bed-ridden. I still have no explanation for this phenomenon. I advise patients to undertake budgeted activity after testing the boundaries at which relapses occur. Most are able to function quite well with this advice. Simply telling them to get fit to overcome their CFS is totally counter-productive. And for the record I have not come across anyone (GP or patient) who has the "widely held belief that prolonged rest and social withdrawal should be advocated" – see page 43 of your guideli– this should be deleted.

Your advice on managing sleep disturbances uses an approach to treat normal people who go off the rails with their sleep patterns. My experience with classic CFS patients is that they reluctantly fall into this pattern – it is internally driven rather than some response to external stressors or patient choices. They often sleep 14+ hours a day. As such, I take a more gradual approach to restoring their sleep patterns. The majority of my patients are stable with 10 hours of sleep, and seem to require this to function. Many require a low dose TCA's (at least initially) to achieve improvements in their sleep dysfunction.

My experience with using SSRIs in CFS patients is that the majority can only tolerate low doses. Their CFS actually worsens with usual doses used to treat Depression. I have found Zoloft (up to 50mg) and Cipramil (up to 20mg) the most useful.

With regards to the orthostatic intolerance symptoms I have now trialled a treatment with four patients using a pressure garment (an RAAF G-suit – lower body garment). All have reported huge relief of symptoms in relation to 'brain fog', neuro-cognitive dysfunction, headaches, and inability to sit or stand for even brief periods. My current patient is now (for the first time in 4 years) able to get stuck into her Year 12 studies, and doing extremely well.

I wish I had much more time to add further comments, but as the deadline is drawing near, I will conclude with a final comment. Even if the above matters were to be rectified, there is abundant evidence that the majority of GPs will ignore these guidelines (as they do with many others). You state on page 4 that these guidelines are aimed at assisting GPs. If that is still the case then I would suggest that your working group make some effort to consult with the likes of Dr Chris Silagy and others on how to make these guidelines GP user friendly and implementable.

Even better, would be to conduct focus groups with GPs who have considerable experience with managing patients with CFS. You already acknowledge on page 33 that an experienced GP should be able to make a confident diagnosis of CFS in most patients – yet you seem to completely ignore this stratum of clinical expertise. Fortunately, the ME/CFS groups have very professionally developed patient information and self management guidelines to use while we (the medical profession) get our act together.